Cerebral Amyloid Angiopathy

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Sirenofthespring
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Re: Cerebral Amyloid Angiopathy

Post by Sirenofthespring »

Thanks, she already has a cat and she does pet the cat but it is not the same. I also got her a foot massage machine. She only wants someone to rub her back. Sometimes she uses a stick and does it herself...but she does not like it as much and her anxiety is always really bad...It's like her brain somehow connected this to calming when she was healing from the stroke. It seems like she really wants attention, too.
NF52
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Re: Cerebral Amyloid Angiopathy

Post by NF52 »

Sirenofthespring wrote: Sat May 21, 2022 3:34 pm Thanks, she already has a cat and she does pet the cat but it is not the same. I also got her a foot massage machine. She only wants someone to rub her back. Sometimes she uses a stick and does it herself...but she does not like it as much and her anxiety is always really bad...It's like her brain somehow connected this to calming when she was healing from the stroke. It seems like she really wants attention, too.
You have such deep insight and empathy into your mother, which must make it all the more difficult to be unable to soothe her. It may help to remember that at some point she may become less anxious and also less aware of her current distress. My adult son has little memory of the days and weeks he was sick with pneumonia as a child, or his time in the hospital after heart surgery at age 5. As caregivers, we hold those memories forever; but need to give ourselves a break when we can't take their pain away.

Again, this is just brainstorming, but I wonder if either a weighted blanket or vest or a back massage pad with variable controls (or remote controls for the aide to use) would give her some competing sensory input to take the place of the desired back rub. The right hemisphere in part interprets the body's sensory input to create a narrative. Some people with right-hemisphere strokes or right-hemisphere severe TBI insist nothing is wrong with the left side of their body, or have emotional dysregulation since they have difficulty integrating input into a coherent sense of self.

Also, you may want to reach out to Steven M. Greenberg MD, PhD, Director of the Hemorrhagic Stroke Research Program at Mass General. Their Cerebral Amyloid Angiopathy research laboratory https://www.angiopathy.org
... focuses on the development, diagnosis, and treatment of cerebral amyloid angiopathy (CAA)....Our research is divided into a clinical program that focuses on the molecular epidemiology of CAA and a laboratory program studying its pathogenesis. Our clinical research program has assembled a cohort of patients with probable CAA-related cerebral hemorrhage. This has allowed us to identify genetic risk factors for CAA such as the APOE genotype[BE1] , as well as the progression of the disease over time
And I hope this answer from the FAQ page will be of some comfort to you:
If my family member has CAA, will I get it too?
A: Probably not. There are some families (primarily from Denmark, Iceland, and Belgium) that inherit CAA in a dominant fashion, but most CAA patients do not have any affected family members. While other genes such as apolipoprotein E may slightly affect the risk for CAA, their association with the disease appears to be too weak to cause multiple cases to cluster in a family. Although there may be some increased genetic risk in relatives of CAA patients, we believe this risk to be small and rarely see two affected people in the same family.
Keep us posted; I hope you and your mother find that life again holds moments of peace and joy soon.
4/4 and still an optimist!
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